Global alliance pursues genomic and clinical data sharing

More than 70 healthcare, research and disease advocacy organizations representing over 40 countries have formed a global alliance to facilitate the secure sharing of clinical and genomic data, according to a June 4 Broad Institute announcement.

Given the falling cost of genome sequencing and greater the frequency of research and clinical data donations, the alliance seeks to develop and promulgate regulatory and technical standards to share and interpret the information responsibly.

 “If we remain on the current path, the likely outcome will be a hodge-podge of balkanized systems—as developed in the U.S. for EMRs—a system that inhibits learning and improving healthcare,” according to a 34-page white paper outlining the scope of the alliance.

According to the white paper, the alliance will:

  • Create interoperability of technical standards for managing and sharing sequence data in clinical samples
  • Establish guidelines and procedures for privacy and ethics and encouraging responsible and voluntary sharing of data
  • Develop technology platforms with open standards that are designed to enable secure storage
  • Access control and controlled sharing of information at multiple levels
  • Build tools for participant-centric consent
  • Develop tools for data processing that support major sequencing platforms
  • Establish methods to make results of analyses comparable across centers and technologies
  • Build computational architecture and application programming interface (API) supporting innovative apps

“Making genomic data and tools interoperable in a secure and trusted manner will generate a powerful network effect: the more data and methods can interoperate on common platforms, the move valuable to patients, researchers and healthcare professionals each will become,” according to the white paper.

The complete list of partners is viewable here.

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